A journey of life with Deafness,Cochlear Implants and a mitochondrial condtion.

Welcome To My Blog...

This blog follows my journey of 2 different cochlear implants and my condition: Multiple mitochondrial DNA deletions I have started this blog 15 yrs too late but ill try my best to fit it all in! I have packed a lot of medical jargon into my life since I was 8.

There has been happiness and tears but I've come through it all with my family and my friends.I'm profoundly deaf as a result of a condition called Multiple mitochondrial DNA deletions or mitochondrial disease RRM2B as my professor Sir Dough Turnbull calls it! I have had since birth but I didn't find out this til I was 19. I have had 2 cochlear implants (at the age of 8 and then i lost the 1st cochlear implant in my right ear after 7 years due to a bad, accruing ear infection (which I couldnt fight off because of my mitochondrial condition) at the age of 15 and had a 2nd one implanted in my left ear that same year which I have now.

My Story

31 December 2008

I am going to continue the knitted square quilt that I started in 2006! I have various bright coloured knitted plain & patterned squares in a box under my bed! Although, I don't know if I yet have enough to finish the blanket so I may have to knit some more squares!! I started knitting squares (not for the blanket, knittiing in general) when I was 8 because a lady on my road used to babysit me and she taught me the basics of knitting, we used to knit squares to get enough for a blanket and she would sew it up! We even did it at the junior school when I was 9 and a few other ladies and pupils of the school used to come to knitting club on a lunchtime and knit squares and the blanket would go to charity! Unfortunately, I wasn't there for the time they had a photo taken with it when it was completed as it was the time when I was in hospital having my 1st cochlear implant!

I got shown the photo when my teacher of the deaf from the junior school visited me at hospital! The quilt looked great! :D

Years later, I made my own which now is only good for a rag now!! Full of holes after much use! So I began knitting more square with also patterned squares which I got out of knitting magazines! It was so tricky to do some of the patterned ones as they are hard to do and it took me a few tries but I got there in the end and it was an achievement when I saw the squares at the end!

The box under my bed will surely come out when I'm bored at home and something to do! I've always enjoyed making things like that!

I decided not to make any resolutions this year as theynever happen or gets done so at least I’ll avoid major disapointment when they don’t happen. I’ve made the same ones the last few years and it really sucks when they don’t happen! It wont stop me hoping it will happen though…

I hope everyone else has a HAPPY NEW YEAR & it brings you everything you could hope for!

26 December 2008

I spent my christmas eve evening in the company of my friends, I had a great time seeing everyone in my group of friends! There was food, laughter, games, talk of old times and memories, presents and I loved it! I arrived back at home at 2am! An hour after my parents & brother got home so I was the last one home so they called me a dirty stop out! haha

We all spent an hour chatting about random things before finally going to bed at 3am!I love times like that, when we just all sit there talking about odd and random things, never mind if we are drunk or sober, we were just having a good time chatting without the TV on & talking about nothing and anything!

It's safe to say I didn't sleep much! I was too excited about the day ahead and the memories of a great night I just had!

Christmas day started for me at 10am, we went to open our presents and see what we all got!

I was pretty much happy with what I had got!

We went to the local pub at 12 for our traditional christmas drink and stayed til the pub closed at 3pm.

The family came home to crackers and Christmas Dinner and just about the whole family is knackered and asleep so I settled in to classic Christmas TV and chocolates!

24 December 2008

23 December 2008

Today reminded me something about myself that all of my family notice which is my awareness! I have none!!!! ha! I can be in a world of my own when I'm out & about... My mum always has to stop me at roads sometimes as I'm not entirely aware of where I'm going!! If I;m on my own, I'm more aware of the world around me and am careful on the roads! I listen very carefully in the distance if there's any cars coming down the road because I can usually hear them before I see them.

Also I was in shops, and my family always had to tell me to move to let people past!Not because I'm being ignorant, but as I can't really see out of the side of my eyes because of the mitochondrial condition, i can't really move my eyes that well... so I only see what's in front of me rather than what's around me! ike today, sometimes I get friends texting me saying they saw me in town and maybe even waved at me but I never saw them!! So I feel bad that I never saw them and said hi to them!! & I have to text them later and apoligize to that friend!!

I am such a fan of The Mighty Boosh starring Noel Fielding and Julian Barratt! I just can't decide which episode or character I love because it's ALL fantastic!!! I love their "crimping" songs!

If you're not familliar with The Mighty Boosh or "Crimping" songs, here is an example

Lyrics to the crimping song:

Bouncy Bouncy Oh such a good time Bouncy Bouncy Shoes all in a lineBouncy Bouncy Everybody summersault, summersault Summertime Everybody sing along Bouncy Bouncy oh such a good time Bouncy Bouncy White socks slipping down Bouncy Bouncy Stilettos are a no no Bouncy Bouncy oh Bouncy Bouncy oh Everytime i bounce I feel I could touch the skyeeeee

I have to say that Vince (Noel Fielding) & Tony Harrision (Noel Feilding) are my fave characters! They are just sooooooooo funny!

Tony Harrison

Julian Barratt & Noel Fielding

I hope I'll maybe able to go see one of the Live Mighty Boosh show one day!!

21 December 2008

I dont't ever believe this quote because words DO hurt me... I try not to show that it has hurt me and when I'm alone, I'll have a little cry. It seems wussy but I can't help it. For example, there can be people I try to help and they don't give any praise to how much thought I've put in something and give you no thanks for it or there can be people who say things about me and how I am regardless of whether they know me or not which really upsets me because sometimes I don't want to be like how I am. I don't want to have OCD, which is mostly the factor of why I get snapped at by my family when I am so very FORCING myself not to do whatever I'm doing. It hurts when I'm out of the room and I can hear them talking about me as if they think I can't hear them but I can. My family underestimate really how much I can hear regardless whether I'm in the room or not! Sometimes I just want to go out and get drunk as possible and forget everything but I can't because I hate drinking and going out to clubs and stuff and I can't even let myself go and relax sometimes when I've got OCD things on my mind...

So when ever I'm upset, I get angry, I slam doors, hit the walls and I lock myself in my room and lie on my bed and think about stuff and have a cry and get it out of my system and it's gone the next day til the next time... It's just a neverending circle.

Sometimes I'd want to be a totally different person but I know if I hadn't gone through the stuff I have then I wouldn't the person I am today so I dont and mostly I like my personality and think if people don't like me the way I am, they aren't worth knowing but I cant do that with my family, they are always there, sometimes it's a good thing and sometimes it's a bad thing but I wouldn't be without them or my friends.

All I can say is the OCD is taking over my head at the moment and I can be washing my hands every half hour which the sound of running water is making my mum and dad go mad and I'm there at the sink UNBELIEVABLY trying not to wash my hands and each time I let myself down and that what upsets me because I don't want to be there. I don't want to be thinking of my mum and I can't hug her because she's touched the bloody bin! The other night she told me I will end up dragging me back to the OCD doc again if I can't get over it. I hate going there, my next appointment to see him is February which probably means the congentive therapy may be looming and I'm not looking forward to it but I know I have to do it otherwise I won't get my life back and it's always going to be stopping from doing what & where I want to go.

19 December 2008

Today was the last day of the school as they broke up for Christmas! Lots of excitment from the kids!

I spent some of the afteroon making Christingles for the church service which is part of the school.

It brought back a lot of memories because I used to take my Christingle up to the church when I was at that same school years ago! When I got home, I rummaged through the old videos that we have! Yes videos! I was looking for my old school christmas play of 1995 which was a year after having my first implant! thats how old it is! haha With most of our generation using DVD nowdays, I spent this evening transferring the video to a dvd so I can keep it forever! It shows how much the junior school has changed in recent years! First thing I noticed on the video was that the school play of 1995 was that the play included ALL the classes in one play on a night with all parents in the hall rather than these days with health and safety being an issue, it was only two classes each doing seperate plays on dfferent days. It seems a lifetime away from the time when I was there and you would stay behind in the class after school and have fun getting all your christmas costumes on and getting all excited about the up coming play on the evening with christmas spirit in every class!!

Ah the old days! I feel old and I'm only 23!

If you are not clear on what Christingle is, it's a symbolic object that you hold for a christmas church service and I and some of the kids have been making some of these this afternoon but with raisins and dolly mixture!! We also had a ittle christmas assembly where sang some christmas hymns. There were candles all around the assmebly hall and in the dark, it was a very touching scene when all the kids were singing.

The Christingle consists of:

The orange is round like the world

The candle stands tall and straight and gives light in the dark like the love of God.

The red ribbon goes all around the 'world' and is a symbol of the blood Jesus shed when he died for us.

The four sticks point in all directions and symbolise North, South, East and West - they also represent the four seasons.

The fruit and nuts (or sometimes sweets!) represent the fruits of the earth, nurtured by the sunshine and the rain.

The school is church of England so they have services and do hymns in the morning when they have an assembly. The only thing I dont miss about Christingle is that we had to walk up a loonnnnnng uphill path up to the church in the freezing cold carriyng our oranges! I like the fact that they are still tradtional and is a christian junior school!

I don't go back til after January now! Really looking forward to Christmas Eve now to see my mates! It's going to be great seeingthem again as I have'nt seen some of them for months although we are all best friends and speak online! We all have our own things going on so Christmas is always good for an annual group meet as we are all back in our home town!

15 December 2008

I went to Middlesbrough today, was an early start at 9:ooam! Much too early for me but I was looking forward to seeing my nana! It was a 2 hr journey there and back so I listened to xmas song off a cd that my Dad was playing in the car! It was very hard to hear sometimes because whenever we are on the motorway - It can be very noisy on my cochlear implant! The roar of the road so I always sit on the left side of the car because then the radio is directly behind to my cochlear implant so I can attempt to hear music during this loud roaring noise! Sometimes it depends on the song being loud. quiet,uptempo, slow tempo etc...

I can just about hear the music over the roaring noise which is good so I hear most of the christmas songs the CD plays! It's taken me some practice!

saw my cousins too...

a brand spanking new outfit...

And lots of food and games!

Playing a DVD horse racing game! * its fake money of course!*

We exchanged our presents and saw lots of houses with lots of christmas lights! It was like going through a winter wonderland! If you want to see any more christmas pics click on any of the pictures to go to my albums!

14 December 2008

I always try and be as outgoing as possible but lately it has got harder for me the last few years as some of my friends no longer live in my town and have moved to get better jobs and lives and experiences...

I find it hard to make new friends sometimes as when I am out on my own or with people I dont't know, I'm as quiet as mouse and don't always speak up When I'm with my family or my best friends who have known me since school, I'm such a chatterbox! I don't understand sometimes why it can be so hard to talk to people I DON'T know the way I can talk to people I DO know! It's so easy for a deaf person to make friends via the internet with MSN & social websites such as facebook and myspace. I've always tried to stay in touch with my deaf side with the deaf community but I find it hard when i only know basic signs and cannot keep up. I find my self more part of the hearing community but would love to have more deaf community in my life should I ever lose my cochlear implant (fingers crossed it wont happen!) and find myself in my deaf world again, i won't find it so lost?I used to go to social gathering when I was younger just after I got my cochlear implant, we used to go on outings such as trips to theme parks and places like that with a deaf club i used to go to! I don't think they do them anymore...!They used to have christmas do's too with santa giving out presents! I think it's just a plain old pub deaf club now, which is why I dont go anymore... I don't really go to theme parks anymore either as my neck is weak so I cant go on roller coasters but I guess I did all that when I was younger!I would love to see my cochlear implant centre (YCIS) do social events though to meet other implantees in Yorkshire! The only things we have at the moment at our cochlear implant centre is Workshops such as learning to deal with a busy enviroment which I have already coped with since I was 8. I don't know if it's because of lack of people or no one to organise them but I think it would be great and I have spoke to other people who attend the YCIS who think it would be great to do it too! I know that Katie aka Advanced Bionic Girl! has social gatherings in Derby and I wonder why our centre doesn't do things like that...? It would be great I think just to meet other people and learn their experiences! Althought my ci centre does workshops, I dont think it's an ideal social gathering! I have been suggesting social things to my ci centre for the last few years but nothing has ever come of it...? Maybe once they have the new Listening For Life centre all open in January 2009, they may be able to do more things on the social side? who knows!I hope I do get to get out to things like that in future because I'm at home a lot and want to start getting out more but I know I can't do too much too quick! As my last posts have shown, I did too much trying to fit everything in when I was at the school christmas fayre. I'm going to try and make the christmas play at the school too! :D But hopefully, gatherings as such will come up! My friends annual group gathering on Christmas Eve will be awesome as friend Kevin says! haha We hope to get a few group pictures! Every time we have a group gathering as such, a group photo is required! It's almost tradition!! I should be in bed right now! I have to be up early tomorrow to see my nana, aunts uncles & cousins and in a 2 car journey to Middlesbrough. We will also stop off at the cemertry there to lay a christmas weath for my grandad who sadly died on boxing day. RIP Grandad x

11 December 2008

Right, I've got 9 things checked off my "do to list for christmas!" I'm really looking forawrd to this weekend to get my haircut and see my nana and family up in Middlesbro'! Love seeing my nana, she's so funny at times! I wish she lived closer so I could see her more!

I've got my new clothes for the weekend and for Christmas Eve and Day! I tried them on tonight to make sure they suited me and fitted etc... Also, after a fustrating few days, my stiffness of my body is getting better so that's something! So I''m feeling gooood about the upcoming christmas now!!

Does Santa wrap presents or set them under the tree? Well the Elves wrap the pressies and Santa delivers them! haha

Colored lights on tree or white? We have a fibre optic tree that automatically changes colours! It looks magical! We have white lights on our window and blue & multicoloured lights on the trees outside our house! It looks very christmassy!

When do you put your decorations up? HMM... we put ours up as soon as it was Dec 1st!!

What is your favorite holiday dish (excluding dessert)? Gotta be the chicken that mum cooks every year for christmas day!

Favorite Holiday memory as a child? When we had our annual christmas eve party! Our families and friends would come and there would be food spread on the table to eat! Sadly, we don't have those parties anymore as people have moved on... divorced or moved away which is a shame because i always loved them!

When and how did you learn the truth about Santa? I think I just found out myself really as I grew up and learnt the truth! That doesn't mean it spoils the magic of christmas!! :0)

Do you open a gift on Christmas Eve? I'm not going to lie... my parents always let me and brother open one present on christmas eve! I don't do that now though, I wait til christmas Day!

How do you decorate your Christmas tree? Well, we don't have to as it's a fibre optic tree but we do put some silver ornaments on it!

Snow! Love it or Dread it?I LOVE IT of course! I love to watch it snow! But I don't like to go out in it!! haha Can you ice skate? The only time I ice skated was when i was a kid and I went to Wales! I had fun but then I fell and cut my knee open! I still have the scar!!!Do you remember your favorite gift?Er... I think it was the laptop last year! That was the best prezzie ever!What's the most important thing about the Holidays for you? For me, it's seeing my nana and family & my mates! It's one of those rare times me and all the group of mates will get together and catch up!What is your favorite Holiday Dessert ? Gotta be Trifle! We always have it after our christmas day dinner! Which do you prefer, Giving or Receiving? Erm, I like em both really! hehe

What is your favorite Christmas Song? Either Wham - Last Christmas or Band Aid - Feed the worldCandy Canes! Yuck or Yum?Erm, not really tried one as they are too hard on my teeth!!Ever recycled a Christmas present?My parents probably have done it for me!

Here is what she wrote and the rules, and the story. I hope you enjoy!I, Splotchy has started a new strain of story virus and indeed it is going viral! Here are the rules to play this creative game:Here's what I would like to do. I want to create a story that branches out in a variety of different, unexpected ways. I don't know how realistic it is, but that's what I'm aiming for. Hopefully, at least one thread of the story can make a decent number of hops before it dies out.If you are one of the carriers of this story virus (i.e. you have been tagged and choose to contribute to it), you will have one responsibility, in addition to contributing your own piece of the story: you will have to tag at least one person that continues your story thread.

So, say you tag five people. If four people decide to not participate, it's okay, as long as the fifth one does. And if all five participate, well that's five interesting threads the story spins off into.Not a requirement, but something your readers would appreciate: to help people trace your own particular thread of the narrative, it will be helpful if you include links to the chapters preceding yours.

Alright, simple enough. Now for the start of the story:

The bus was more crowded than usual. It was bitterly cold outside, and I hadn't prepared for it. I noticed that a fair number of the riders were dressed curiously. As I glanced around, I stretched my feet and kicked up against a large, heavy cardboard box laying under the seat in front of me. (Splotchy)

The man who apparently owned the box glared at me and I moved my feet closer toward my seat and sat up straighter. Outside the wind was blowing hard and I watched out the window as the tree limbs swayed along the street and people clutched their scarves more closely about their heads as they made their way into the wind. We passed a building that had a flag pole and the flag it flew stood straight out and flapped angrily it seemed to me. I bemoaned my fate of having forgotten my hat, gloves and scarf on such a miserable day but I had been running late and had to get to the bus stop if I wanted to get to work on time.

After a few moments of surveying the frigid scene outside my window I returned my attention to my fellow passengers on the bus and noted with some alarm that one woman was so bundled up in her hat, coat, and heavy wool scarf that it was hard to even see her face. Another man sitting next to the gentleman with the cardboard box wore a jumpsuit which I found very peculiar indeed. He was sitting quietly with his eyes closed and seemed to be sleeping. My gaze upon him though brought his eyes open with a snap and he stared straight into my eyes with a most hypnotic gaze. His eyes were a bright light green. I had never seen such beautiful green eyes and could not look away. It reminded me of that famous photo taken of the Afghan girl, the eyes were so striking and fierce even. I tried to look away but it was impossible. (Liberality)

The intenseness of those eyes, sent a "warm" chill through my body, so very hard to fathom the clash to my senses. Stop after stop, the stoic passengers would disembark to face the fierce weather, knowing I would be facing the same horrid elements within a matter of minutes. The green-eyed gentleman was rising from his seat to head out into the storm, when he tripped over the cardboard box, which had slid into the aisle, bringing a horrible scream from the owner. As it pushed up against the seat just behind the driver, the lid came open and there were screams from everyone surrounding this wicked sight. (themom)

My first instict was to join the maddening crowd in blood curdling screams, but I refrained. It was of course a sight to bring about screams for many, and curiosity for those like me. I have seen these spiders before, in books really, and actually knew of their variety from my college biology days. As the mans box broke, thousands, if not more, spiders scrambled out of their captivity. It was a curious site indeed, as these spiders were not your garden variety, but huge mothers of nature. Not poisonous as the crowd of those that lifted feet and jumped on the bus seats would have their biological instincts instruct, but big buggers! Biggest you would ever see in most parts of the world. The owner of the box of course was upset, and this intrigued me. What was he doing with these arachnid's? Especially this species that I immediately noted was not technically an arachnid or spider due to the fact that they have a small antenae that is prominent. I off course noted this right away. This rare species is found in remote locations in hot countries close to salt water. I tried to connect his amazingly green eyes to the indiginous zone of these creatures, but could not. This I knew: Here, near the great lakes, they would be impossible to find. On this bus, on this route, at this time, there were hundreds of thousands loose! (DAVID)

As the spiders scuttled about, alomost escaping off the bus as the owner struggled to scoop them all back in to the box. People on the bus trying not to touch the sides of the bus thinking they are crawling the walls....

Kids were running around after the spiders while parents were grabbing their kids back screaming at them not to touch them. Someone opened the door! The spiders sense the coldness from the outisde of the bus and all scuttle out as the owner of the cardboard box screams "SHUT THE DOOR THESE SPIDERS ARE GENETICALLY MADE!" People started murmuring and one girl in the corner of the bus said "Are you serious?? are they dangerous??" "No No" he stuttered, "they are bred for testing" "testing of what" screamed the girl! "they have been bred for their vibration skills, their tiny little hairs on their legs!" the man says dramaticly! the girl says curiously "vibrations... wow!" (Laura J)

7 December 2008

I'm sitting in my bedroom at the PC, instead of my usual couch with laptop at the moment as I'm confined to my bedroom as my parents sleep!

The reason

I can't get out of my sofa chair in living room where my laptop is when my body feels stiff as it's too low

Parents wanted to go to bed so I had to come upstairs to my bedroom the same time they did as they have to assist me by walking behind me up the stairs should my knees buckle and I fall down the stairs...

You may ask why can't I do these simple things which is because of the mitrochdrial condition and it makes bits of my body weak when I've done too much in too little time hence the christmas fayre at the school yesterday which I was on my feet from 1pm til 6pm doing errands and things like that. The thing is I don't hurt when doing whatever I'm doing at the time, the aches just sort of creeps up on me later on in the day! I came straight home from the christmas fayre at 6:30pm, made a cuppa and collpased in my chair! I dont think I had anything to eat since I had some food and snacks before setting off to the school at 12:30. God knows walking up the little hill to the school cripped me when I get off the 10 minute bus ride there as I normally get a lift off my brother or dad to the side of school.

My parents have enlisted me to have a walk everyday even if its just to the post box down the road to strengthen up my leg muscles and whole body. To be honest, I haven't felt like this since I was in ICU and I was learning to to get on my feet again after being laid up for 5 weeks...!

It's such hard work to do the littlest thing such as go to the toliet or just put some clothes on because I can hardly lift my legs up when I'm standing! If I bend over to do it, my knee is gonma buckle and I'll end up in a heap on the floor! I've cried several times today out of fustration and I can't rest til I'm sat down somewhere safe and won't fall over. My parents have been forcing me to do things myself such as getting out of the low sofa chair!

5 December 2008

With the help of my brother to help me what the santa was saying,I put subs on this video! It was so tricky listening to what the santa was saying because it's an very fast up tempo song so we had to keep repeating the santa over and over again til we got the words that he was saying right! I got some words correct like the Merry Christmas and other lyrics BUT even my brother had a hard time knowing what certain words were and he's hearing! But we got there in the end!

This is Mrs Porter, my old junior school helper at the school that i volunteer at (i stayed in touch with her)

This is Miiss Boocock, the teacher I help in class dressed up as an Elf for Santa's Grotto!

The xmas grotto at the school

To view more pictures of the christmas fayre click on one of the last 3 pictures!

3 December 2008

I always try to remain positive about everything going on in my life at the moment. I hate it if one of my friends or family is sad or upset, I'll try my very best to cheer them up! I make the best of what I have got in life. My family & friends are amazing at cheering me up at the low points of my life! I realise how lucky I am to have such good support from my family and friends when I really need them! They make me laugh when I'm down or upset about something and help me put a positive spin on the thing i'm upset about! I hate being depressed about something & do my best to sort it out and make my happy as possible! I try to have friends who are positive and always happy although i know people aren't always happy but as long as they got a positive attitude & know how to have a laugh then I am happy too!

i spent 6 months being depressed because of my diagnosis of being in hospital in 2003 when I was first admitted for my mitochondrial condition and I've worked hard at being happy again! So my family are glad that i'm finally back to my cheerful self!

Times when I'm happy:

Talking to friends via MSN/text/in person

When someone in my family circle does something funny (love you nana!)

2 December 2008

My PEG area has been extremely sore these last few days so it hurts my stomach area whenever I move so I've been having some painkiller medicene for it. It's unavoidable, having pain in your PEG which is kinda rubbish but I know how to handle the ways of pain of my PEG. My nursey carer of me who goes by the name of mum, put on some cream and a cotton wool dressing between my PEG & stomach to stop it irritating and stop it rubbing against the stomach. It's never got as bad as the first time it happened though because that was such terrible pain!

Another source of pain is a giant spot on my head which has been bothering me for the last 2 days! I've been splashing my dad's aftershave on it to get rid of it by christmas! hehe Hopefully it will be gone in a few days! It's the least of my worries! :0)

1 December 2008

Wow It's the first of December already! I have made my blog very festive for you all! The current blog picture is from last year but I will soon have another few christmassy pictures to choose from this year soon! :0)

We are putting up our large fibre optic tree as I type! Lots of tinsel to decorate the house! Ooh and I opened my advent calender which is a Dr Who one with a dalek on the front! hehe I'm such a big kid!!!